Opioids are highly controversial in the world of headache medicine. Beyond the obvious issues of dependence and addiction, there are risks specific to headache disorders. In this short video, two headache specialists address some of the issues, including:

Taking opioids more than eight times a month puts a person at risk for rebound headache (also called medication overuse headache or MOH).

Opioids can reduce the efficacy of other migraine medications, including abortives and preventives.

Migraine is an inflammatory condition. Opioids may increase inflammation, counteracting any migraine relief they might provide.

Opioids aren’t particularly effective for head pain to begin with. The receptors of the brain associated with head pain have few opioid receptors, so there’s not much for the opioids to work on.

This is a huge, controversial topic, but the more I learn about it, the more convinced I become that opioids should be of limited use in treating headache disorders. Opioids have a place, but that place is small and specific. They shouldn’t be a front line treatment, which they too frequently are.

Applying for Social Security Disability benefits is a complicated battle for people with headache disorders. The process can last years and rulings often go against the patient. One reason for this is that the Social Security Administration’s official criteria to qualify for benefits does not include headache disorders as potentially disabling.

The Social Security Administration is currently revising the criteria for neurological disorders. Despite urging from several members of Congress and the Alliance for Headache Disorders Advocacy, the administration has said they will not include any headache disorders in the revised criteria. Without this inclusion, people who are disabled by headache disorders will continue having to fight for years and through numerous appeals for benefits they may not ultimately receive.

You have until April 28, 2014 to help change this. Write the Social Security Administration TODAY on the neurological revisions comment page. Submitting your comment directly to the administration is the most effective action you can take, but you can also voice your support by signing this petition. And please ask anyone you know who cares about someone who is disabled by a headache disorder to submit a comment to the administration.

Fear of Addiction Means Chronic Pain Goes Untreated, according to an NPR story that aired last weekend. While there’s definitely truth to the headline, it obscures the nuances of physicians’ reluctance to prescribe opioids (a.k.a narcotics) for chronic pain in general and headache disorders specifically (particularly migraine).

Opioids were originally prescribed for short-term pain, like from surgery or an injury, or for use in end-of-life care. Chronic pain is a serious medical issue that is both under-treated and has limited treatment options, so it’s understandable that opioid painkillers filled that void, especially because opioids are the only source of relief for many people with chronic pain. Unfortunately, they began to be prescribed for long-term use before there were a lot of studies on their long-term effects. Now that research is catching up, this use is being questioned.

Beyond addiction, other potential problems for using opioids for chronic pain include opioid-induced hyperalgesia, tolerance and the systemic effects of long-term use. Opioid-induced hyperalgesia, when opioid use increases a person’s sensitivity to pain, is one concern. Tolerance — which requires taking increasingly higher doses of the medication for it to still be effective — is another. The repercussions of regular (and often increasingly higher) doses of opioids could have on the body’s systems should also be considered.

Headache disorders — and particularly migraine — have additional issues. Rebound headache (medication overuse headache) is the most widely addressed concern. In addition, the American Migraine Prevalence and Prevention study found that using opioids more than eight times a month can cause episodic migraine to transform into chronic. (Diana Lee recently reported that there may be a difference between short-acting opioids and long-acting ones and that long-acting opioids may be OK for long-term pain management for people with chronic migraine.) Headache specialists also believe opioids impair the efficacy of preventive medications.

On top of that, opioids aren’t even particularly effective for any type of head pain. In the video I shared last week, headache specialist Mark Green explained why:

“Part of the reason for that is there are fundamental differences in the chemistry of head pain compared to visceral pain. In the receptors subserving head pain, we really don’t have a lot of opioid receptors, so the upside for the use of opioids is rather low. That’s why we use, for example triptans and ergots. Those serotonin receptors are very well represented on those receptors that subserve headache.”

What do I get from all this?

Boiling down concerns about opioid use to a fear of patients becoming addicted is an oversimplification.

There are a lot of unknowns about opioid use for chronic pain. As more research is published, the less they seem like a good long-term solution.

Head pain is different than bodily pain and migraine may different still.

Chronic migraine isn’t a chronic pain disorder, nor are chronic cluster headaches. I don’t know where tension-type headache falls on the continuum, but I’m inclined to believe it’s more on the side of other types of headache disorders.

Using opioids can significantly alter treatment for an underlying headache disorder.

Mostly, I’m left with a lot of questions (and so are researchers and physicians).

I’m not anti-opioid, but all these unknowns plus the generally negative outlook of what we do know make me very, very cautious. Ideally, your headache specialist would be the prescriber, but fewer and fewer are willing to prescribe opioids (not out of fear of addiction or the DEA, but because of the ramifications for treating the condition you’re using opioids for in the first place). If your headache specialist won’t prescribe them, still be honest with them about how often you use them and at what dose — without that information, your specialist can’t treat your headache disorder properly.

Note: I’ve used words like “potentially” and “can” a lot in this post because not everyone’s the same. It’s important to be aware of the risks, but also to remember that not everyone will have all the same issues.

“Why don’t we have our own walks and sassy tee-shirts?,” reader Juli recently asked. It’s a great question — there’s a plethora of fundraising runs and walks for every other condition or illness, so why not migraine? Miles for Migraine, an organization I recently learned about, is exactly that, a race dedicated to raising awareness of migraine and headache disorders.

Nationwide: Miles for Migraine in Your Town
Don’t live in the Bay Area? Miles for Migraine has just launched Miles for Migraine in Your Town in a bid to spread the awareness nationwide. With this program, anyone anywhere in the US can use their participation in any scheduled race to raise awareness about migraine and headache disorders. Alternatively, they will work with volunteers who want to organize races specifically for raising awareness and money for migraine and headache disorders.

In addition to providing fundraising support, Miles for Migraine in Your Town will provide participants with virtual training resources and “cool swag,” including T-shirts to wear in the run. Money raised will be donated to a local headache clinic or, if there’s no local clinic, into expanding dedicated Miles for Migraine races across the country.

The first Miles for Migraine in Your Town is underway for the Philadelphia Marathon on November 16th and 17th. Details are available at M4M in Your Town – Philadelphia.

Background
I had the pleasure of learning about this exciting nonprofit in a call with the race director. It started with the bright idea of Eileen Jones, a migraineur and nurse, who joined the Alliance for Headache Disorders Advocacy’s 2007 visit to Congress to request funding for migraine research. After legislative aides told AHDA representatives that they needed to raise awareness about migraine and drum up support from the general public before funding would increase, Eileen decided a race would be a good way to do just that.

The first Miles for Migraine race was held in San Francisco in 2008 with the goal of eventually expanding nationwide. With the launch of Miles for Migraine in Your Town, they’re in the process of spreading awareness throughout the country. Please support their tremendous effort, either by participating in a run yourself or encouraging your loved ones to do so. With increased awareness comes less stigma for migraine an all headache disorders.

Intracranial hypertension (IH) is a headache disorder where the body cannot effectively absorb or drain CSF. It is caused by too much cerebrospinal fluid (CSF) pressure inside the skull. Also referred to as benign intracranial hypertension and pseudotumor cerebri, many people with headaches fear IH is the cause. The most common symptoms are:

Severe headache

Visual changes

Whooshing noise in one or both ears that is correlated with the pulse (aka pulse-synchronous tinnitus)

Whether you’ve been diagnosed with IH, are worried you might have it or just want to learn more, the Intracranial Hypertension Research Foundation‘s website is the place to go. Created by a retired ophthalmologist and his wife after their daughter was diagnosed with the illness, the foundation supports medical research and is an educational resource for patients, families and medical professionals. Exploring a Medical Mystery is an introduction to the foundation and the disorder.

The Intracranial Hypertension Research Foundation is also building a registry of people who have IH. Researchers can use the database as a foundation and recruit study participants. It also documents the illness and its effects, which helps teach medical professionals, public policy makers and the general public about IH. If you have IH, please consider registering.